Values-based practice - Using the book, He Died Waiting, as a learning tool

The book, He Died Waiting: Learning the lessons - a bereaved mother's view of mental health services by Caroline Aldridge (2020), and the postcards with quotes from it, can be used in many ways to help students and practitioners to develop reflexiveness, empathy, and values-based practice. This resource provides materials for two, 50 minute – 1 hour, workshops. These activities are perfect for students and practitioners across health and social care. These resources can be adapted for use in 1:1 supervisions, larger groups, or other audiences. For example, they could be used with patient/service-user participation representatives and/or carers to explore their experiences and what values-based behaviours they would like to see from professionals.

To assist practice educators and mentors, and student or newly qualified social workers or nurses, it is indicated where the activities might provide evidence for social work’s Professional Capabilities Framework (PCF) (BASW, 2018) and the Nursing and Midwifery Council’s (NMC) The Code (professional standards and behaviours) (2015).

He Died Waiting Postcard Activity

There are 8 postcards in each set (available from www.learningsocialworker.com). For this activity we have chosen 5 of the postcards from Set 1 to use in group discussions. For each we have suggested some prompt questions. You might wish to print out the activity and create cards or a worksheet from it.

NB: The activity could be undertaken as 5 (10 minute) starter or plenary activity in teaching sessions, team meetings, supervisions, or workshops.

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“Love, like compassion, are human necessities that keep us in the realms of kindness.”

· What does compassion and professional love look like in your placement, work setting or organisation?

· What are the challenges and benefits of practising with love, compassion, and kindness?

Evidences:

PCF - 1 (professionalism) , 2 (values and ethics), and 7 (skills and interventions).

NMC code – 1.1 (treat people with kindness, respect and compassion)

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“The files record his life in a way that misses the point of him. There is no recognition of his intelligence, his caring nature, his resilience, or his value to his friends and family.”

· How do you (will you) ensure that your recording captures the whole person?

· What are the barriers to recording holistically?

· What are the benefits to the patient/service-user and professionals of recording the positive aspects of someone’s life?

Evidences:

PCF - 7 (skills and interventions)

NMC code –2.2 (recognise and respect the contribution that people can make to their own health and wellbeing), 3 (make sure that people’s physical, social and psychological needs are assessed and responded to), and 10 (keep clear and accurate records relevant to your practice).

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“Some people are deemed to be of so little worth that their lives (and their deaths) are mere whispers but his whispered life echoes loudly in the hearts of those who loved him.”

· How can you ‘speak loudly’ for the patients/service-users you work with?

· How do you/could you support the people who use services to ‘speak loudly’?

· Can you think of an example in placement, work setting, or organisation where you have spoken up (or supported someone else to do this)? How could you do more?

Evidences:

PCF – 4 (rights, justice and economic wellbeing), 7 (skills and interventions).

NMC code- 3.4 (act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care), 16 (act without delay if you believe that there is a risk to patient safety or public protection).

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“The situation is not hopeless. There are things we can do. If everyone committed to doing their own tiny bit things could change.”

· How have you influenced change in your placement, work setting, or organisation? Or, how do you plan to influence change?

· Thinking about your own role, what are the barriers to influencing change?

· What could be the benefits to the people who use services if everyone committed to promoting positive change?

Evidences:

PCF - 8 (contexts and organisations) and 9 (professional leadership).

NMC code – 9 (share your skills, knowledge and experience for the benefit of people receiving care and your colleagues), 25 (provide leadership to make sure people’s wellbeing is protected and to improve their experiences of the health and care system).

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“Eloquent words are not inspirational, or believable, unless they are accompanied by actions.”

· What action have you taken this week in your placement, work setting, or organisation that shows patients or service-users that you are believable?

· What were the challenges in taking this action? How did you overcome them? Where there any conflicts?

· How did the patient/service-user feel about your action? How do you know that?

Evidences:

PCF – 2 (values and ethics) and 7 (skills and interventions).

NMC code - 3 (make sure that people’s physical, social and psychological needs are assessed and responded to).

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He Died Waiting is a call to action in memory of Tim (a young man who lost his life). Readers of the book are invited to make a pledge of what they plan to do to nurture and protect the mental health of others as a #PledgeForTim

At the end of this activity – on the basis of your discussions and reflections, what pledge will you make? If possible share this pledge with others to inspire them. One way is to post on Twitter using the hashtags #HeDiedWaiting and #PledgeFor Tim and to tag in @waiting_he

Permission from the author has been given to use the He Died Waiting postcards for educational purposes provided the following citation is used:

Aldridge, C (2020). He Died Waiting: Learning the lessons- a bereaved mother’s view of mental health services, postcards. Norwich. Learning Social Worker Publications.

He Died Waiting Chapter Activity

Either before, or at the start, of the workshop, students or practitioners read the short chapter Ignorance (is bliss?) (appendix 1). In this chapter, Caroline describes her family background and the things that influenced her understanding of mental illness before she became a parent.

Discussion afterwards relates to PCF 1 (professionalism) and 6 (critical reflection and analysis) or NMC code 1.3 (avoid making assumptions and recognise diversity and individual choice) and 20.7 (make sure you do not express your personal beliefs (including political, religious or moral beliefs) to people in an inappropriate way). Reflective discussions should focus on developing self-awareness around the way that ‘family scripts’ and upbringing impact on our values, beliefs, attitudes, and assumptions.

Questions used as prompts for discussion could be:

· How did you feel reading this chapter? Why do you think you felt that way?

· What were your ‘family scripts’ (values, beliefs, attitudes) in relation to mental health difficulties and drug and alcohol misuse?

· Were these explicit or implicit? How did you absorb these as you were growing up?

· What was the influence of your ‘family scripts’ on you as a child? What, or who, do you think influenced these scripts?

· Now, as an adult have you might have altered/adapted your ‘family scripts’ about mental health difficulties, drug and alcohol misuse, and if so why and how?

· In your current placement, work setting, or organisation, what do you notice in your own reactions to working with patients or service-users that may be a result of your childhood family scripts or your adapted ‘family scripts’?

· What do you notice about the reactions of patients/service-users, carers, or professionals about the way their ‘family scripts’ influence them? Or indeed wider societal scripts?

· Having read this chapter, and discussed and reflected on the influence of childhood and family attitudes to mental health difficulties and drug and alcohol misuse, how will you use any insight gained in your practice?

This resource was created by Caroline Aldridge (social work lecturer and author) and Claire Skilleter (social work practice education lead). For other resources please see www.learningsocialworker.com. Caroline can be contacted via caroline.aldridgesw@yahoo.com or Twitter (@waiting_he)

References:

Aldridge, C (2020). He Died waiting: Learning the lessons- a bereaved mother’s view of mental health services. Norwich. Learning Social Worker Publications.

BASW (British Association of Social Workers (2018).Professional Capabilities Framework. Available at www.basw.co.uk/professional-development/professional-capabilities-framework-pcf/the-pcf/entry. Accessed 3rdJanuary 2020.

Nursing and Midwifery Council (NMC) (2015). The Code: Professional standards of practice and behaviour for nurses, midwives and nursing associates. Available at:www.nmc.org.uk/standards/code/. Accessed 3rdJanuary 2020.

Appendix 1: Ignorance (is bliss?) chapter from He Died Waiting

The author has granted permission for this chapter to be copied and shared for educative purposes provided the following citation is included:

Aldridge, C (2020). He Died Waiting: Learning the lessons- a bereaved mother’s view of mental health services. Norwich. Learning Social Worker Publications.

Ignorance (is bliss?)

My maternal grandmother was from the East End of London. Nanny M had an acerbic wit and proverb, or saying, for almost any situation. From time to time, when she thought one of us needed some of her wisdom, we would get a letter from her with instructions on how to manage life. One of her adages was, ‘ignorance is bliss’. In her view, what you were unaware of, you would not worry about.

When it came to mental health, I was in a state of ignorant bliss throughout my childhood and into my young adult life. I was unaware but not unworried. Maybe not in a state of bliss but just plain ignorant. I was scared of people with mental health difficulties. I did not understand it and I had no interest in finding out. If I had been asked, I would have said that I did not know anyone with ‘mental illness’. I was wrong. I was absolutely wrong. This prejudice (for that is what it was) was incongruent with my altruistic and inclusive values. I am sorry and ashamed that I held such irrational views.

I care deeply about social injustice. I have always been really interested in other people and their wellbeing. Usually, I am kind. So why was I so frightened? Where did my (almost deliberate) ignorance come from? Before you judge me too harshly, let me share with you some of the foundations of my fears.

When reflecting on my youth, I shall use the evocative (and offensive) language of mental health that I grew up with. Professionals also routinely used de-humanising terminology. For instance, people were referred to by their diagnosis. Labelled as a schizophrenic or a manic depressive, the labels predominated. Vile terminology, such as retarded or NFN (Normal for Norfolk), was even used in files. I find it counter-intuitive to use such derogatory terms now but my younger self did not have any qualms about the way people with mental illness were referred to. Instead, my attitudes reflected the prevailing social construction of psychiatric diagnosis and treatment.

I was born into an era where mental illness carried high levels of stigma. Mental health was not talked about openly. People were routinely hospitalised in large institutions where they endured harsh treatments. In vast gothic buildings, they were incarcerated behind high walls and locked gates. The ‘maniacs’, ‘schizos’, and ‘psychos’ were often muddled together with people with learning disabilities (the ‘imbeciles’, ‘idiots’, and ‘mentally handicapped’). A BBC documentary, Mental: A History of the Madhouse[1], graphically illustrates what these institutions were like. Avoiding being sent to the ‘nut house’, the ‘loony bin’, or the ‘madhouse’ was sensible. Those who went in, often never came out. They spent decades, or even lifetimes, locked away from society.

I was a curious child and I enjoyed listening to adult conversations. I overheard all sorts of things. Fragments of information that made no sense individually but they were stored in my mind. Sometimes they were linked correctly together. More often they were muddled up with other information. It is only recently that I have understood how mental health fits into my history. I have started to make sense of some childhood recollections and recognised that we had some ‘highly strung’ folk in the family. Not that anyone would admit that.

I picked up that certain members of my extended family could ‘lose the plot’ from time to time. I had relatives who had an exceptional talent, or who were utterly brilliant (but who also tended to become ‘wild’ or have a ‘breakdown’). Relatives, who were settled in jobs or relationships, who would suddenly ‘go off the rails’ in self-destructive ways that frustrated and worried the family close to them.

One example is Cousin Bill*. I never met him but I heard tales.

‘He’s got these mad obsessions. He’s too clever for his own good.’

‘He gets an idea in his head and that’s it…’

‘He’s crazy, totally bonkers. Barmy.’

‘Cousin Bill is as mad as a box of frogs. He’s got a screw loose if you ask me.’

‘She couldn’t take any more of it … left him … took the child. He’s devastated. Not coping.’

‘He’s in danger of the men in white coats coming for him.’

‘Our Monica* is pulling her hair out with worry about him.’

Cousin Bill died. I can remember sensing that in some way his death was his own fault and he was ‘selfish’. He had ‘done something stupid’. It took several attempts and rebuffs: ‘It’s none of your business Caroline,’ but finally I had an answer.

‘How did Cousin Bill die?’

‘He did something very silly.’

‘What did he do?’

‘He was riding his bike on the North Circular.’

‘But what happened?’

‘A lorry knocked him off.’

‘Oh.’

Oh indeed. About forty years later, I discovered that he was not knocked off his bike. Some memories shifted in my head and were re-evaluated. Oh.

Somewhere along the line, I worked out that people thought I had the potential to go wild. I was lively and energetic, imaginative and sensitive, chatty, and enthusiastic. I could get overwhelmed by my emotions and was a bit prone to crying or getting over-excited. I was told: ‘You are too clever for your own good’. Oh dear, I knew what could happen to people who were prone to over-excitement and cleverness. Women it seems were at risk of becoming ‘hysterical’ and being sent away. Apparently, this could happen simply for being flirty or badly behaved. I did my best to be a quiet and reserved person but my natural exuberance would bubble to the surface and catch me out. It still does. Warnings were issued - I must keep my emotions in check or run the risk of getting ‘sent to the funny farm’. Once in an institution, all attempts to prove one’s sanity become further evidence of madness. For several years during my teens, I had a recurring nightmare that exactly this had happened. That I was incarcerated in an asylum and no one would listen to my protestations of sanity.

With mental illness being a terrifying thing, my reading material probably did not help allay my fears. I was always reading and ‘madness’ was a popular theme in novels. Works of fiction set a negative tone, where people with mental illness are portrayed as incurable and dangerous. Charlotte Bronte’s Jane Eyre (with the dangerous ‘lunatic’ in the attic) and Ken Kesey’s One Flew Over the Cuckoo’s Nest (set in a psychiatric hospital) are two examples of books I read at a young age. I also read many of my mother’s text books, such as Erving Goffman’s Asylums[2], when I was still at school. Goffman’s book graphically described the way asylums (or hospitals) were often built in isolated spots and segregated from the wider community. These institutions created a culture where staff frequently de-humanised and abused those incarcerated there. The ‘inmates’ often adapted to this by becoming ‘institutionalised’ and accepting of their powerlessness. That book made such an impact on me. It was designed to shock and to prompt positive change. It scared me then. What scares me now is that I recognise the concept of ‘total institutions’. The way some professionals and the people ‘cared for’ in institutions, can behave under certain circumstances, is relevant today. The Winterbourne View[3]scandal, where people with learning disabilities were abused by staff, would not have surprised Goffman.

As if all these fears and misconceptions about mental health were not enough, I was also worried about drug use. When I was about seven, I saw an unconscious (or possibly dead) girl in some public toilets. Her friend was crying and trying to rouse her. I was frightened. I was told firmly not to look and to use the toilet quickly. Ever the curious questioner, I could not stop asking about this incident afterwards. The explanation it seems was simple: The girl had taken drugs. She had made a wrong choice. Drugs kill you. One puff and you are an addict. Two and you are heading towards certain death. Never take drugs. The message was internalised. As a deterrent, this strategy was effective, though I would not recommend it. I have never smoked let alone used any illicit substances. Strangely, and perhaps ironically, the perils of alcohol were not spelt out to me. My limited alcohol consumption over the decades, owes more to my inability to tolerate feeling squiffy than it does to any worries about consequences.

My biggest fears, as a parent, were that my children would experiment with recreational drugs, and die, or, they would be locked up in an institution. As my life has progressed I have had to face some of my anxieties becoming reality. I have often wondered how my own early experiences impacted on future events. Did I over-do the warnings? Or were they not clear or strong enough?

Thankfully, over time my attitude towards mental health shifted radically as I gained more knowledge and insight into my underlying assumptions. I have undergone a full pendulum swing, from fearful ignorance to active champion. Though this did not happen until after my not-so-blissful ignorance had done some irrevocable damage.

[1] Mental: A History of the Madhouse, 2010. Documentary made by BBC Four and the Open University. Available at www.3open.ac.uk [2] Asylums: Essays on the Condition of the Social Situation of Mental Patients and Other Inmates by Erving Goffman (1961), introduced the concept of ‘total institutions’ and the abuse that was normalised within them. [3] A 2011 BBC Panorama investigation into the systematic abuse of people with learning difficulties in the care home (Winterbourne View). Available on YouTube - Undercover Care: The Abuse Exposed